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Deep Brain Stimulation

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liveinhope
Deep Brain Stimulation

I wonder have any of you had, or considered, deep brain stimulation.
My consultant is referring me for an assessment and I'd love to hear from anyone who has had it, or who knows someone who has.

Thanks

Live in Hope

villain57

Hi

I had the deep brain stimulation operation exactly two years ago and regard it as a major success. I was first diagnosed in 1986 and had various types of medication, largely Sinemet and latterly apomorphine through a daily infusion. By 2007 I was really struggling, particularly with mobility and the operation offered me a new direction. Getting the operation arranged took nearly a year. The operation itself was a fairly uncomfortable experience, as it lasted 5 hours under a local anaesthetic with a shorter one later in the week attaching the unit. The settings were adjusted gradually over the next 6 months and at this point, I was able to give up the apomorphine treatment. I am now reasonably mobile and no longer have the highs and lows that came with the medication. I take a very small dose of Stalevo, but otherwise rely totally on the deep brain stimulation. Although there are some cases where it has not been as successful, I have been very happy with it.

Kvell

Hi villain 57,
Having been asked if I had considered deep brain stimulation by the Parkinson's Nurse during my last visit, I found your message very interesting.
Can I ask where you had the operation.

I must admit I had my doubts about it after following the progress of "pixie" last year, on this forum.

It was hard going at times. I would like to know how pixie is now.

villain57

I had the operation in King's College Hospital, London

amc

Hi Villain
I found your post so interesting. Our Consultant in France suggested it for my husband last summer but has changed her mind since then. Can I ask what your main symptoms were? I understood that DBS is very successful as reducing diskynesia. My husband's main problem is stiffness and walking. He doesnt really have a tremor.
kind regards
Andrea

villain57

Hi,

It sounds as though your husband's symptoms are very similar to my own before I had the treatment. My main problems were walking related rather than tremors. Dyskinesia was always a problem, but this has largely been eliminated apart from some slight stiffness in my right leg, which prevents me from walking very quickly.

amc

thanks for that Villain. We had dismissed the idea but I think it might be worth investigating a bit more. Good that you had it done at Kings. That is where we used to go. Thought the care was excellent.
x

Kvell

Thanks for your reply villain, The PD nurse told me that it could be done at Romford. She said they are getting better at it now.

liveinhope

Thanks Villain57,

I have found your reply so heartening. I'm waiting atm for an assessment date from Frenchay hospital in Bristol and one minute I can't wait to go, the next minute I'm quaking with fear Exclaim

I'm finding the dyskinesis very upsetting and am also getting less quality "on" time from the meds, the tremor really kicks in if I go over time between doses.

It is worth considering, I know the operation takes a long time but it does seem as if its worth it in the end.

Hi to Kvell and AMC
best of luck with your decisions.

Live in hope

Kvell

Hi liveinhope,
I have the same problems. Today I have been on off time more than on.
It can take me hours to type a message because i am shaking so much, I am always hitting the wrong keys.
Did you read the stemcell message posted by Andrew today?

English Country Dancer

Is the NHS funding this?If so may I ask how old you are?

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